Characterizing Family Structure, Care Utilization, and Well-Being among Persons with ADRD in the Asian Region

ABSTRACT More than half of persons with dementia worldwide are living in Asia, however, most countries in this region do not have a national strategy or policy for care for persons living with Alzheimer’s Disease and Related Dementias (ADRD). Traditional Asian culture emphasizes filial piety that older adults expect their adult children to serve as their main caregivers. Therefore, for persons with ADRD in the Asian region, family members are vital to the provision of care. According to recent estimates, over 80% of persons with ADRD receive care from one or more of their family members worldwide. This proportion is even higher among individuals in Asian countries where the demand for dementia care has increased dramatically, yet institutional and community care services for dementia are limited. Currently, most well-established dementia care programs are intense, multicomponent, resource-demanding, focus only on the primary caregiver, and have mainly been tested in the White populations. It is unclear whether these current dementia care programs are equally appropriate and/or easy to implement among persons with ADRD from other cultural backgrounds, socioeconomic statuses, and/or community settings. In Asian countries such as China, India, and Singapore, cultural expectations of caregiving within the home/family (e.g. filial piety), changes in family structures (e.g. urbanization and migration), intergenerational living environments (e.g. multigenerational households), and involvement by non-family members (e.g. domestic helpers) contribute to a wide array of family dynamics in providing care to persons with ADRD. Therefore, identifying major types of family structures is critical for capturing the demand for informal caregiving and other support(s) and services. Without such knowledge, the development and implementation of effective, equitable, and person-centered interventions and policies to support caregivers for persons with ADRD in the Asian region and beyond will remain elusive. To address this critical gap, we propose to leverage Common Data Elements from 10 national aging studies in Asia to (1) identify major types of family structures of dementia caregiving across countries, (2) assess individual and country-specific factors associated with the types of family structures among persons with ADRD, and (3) evaluate how the types of family structures are associated with care utilization and overall well-being in persons with ADRD. This study will not only define the landscape of family resources to support dementia caregiving in the Asian context, but also significantly advance our knowledge to better inform the design, targeting, and types of community-based dementia care services to prevent suboptimal outcomes and to improve well-being for persons with ADRD in the region.